Non-Speaking People Who Type

This is a topic I would prefer not to discuss, but a few things happened recently that make it difficult not to write about this. So… here goes…

Facilitated communication has had a bumpy history. It began in the ’70’s and has been lurching along ever since. There have been studies done, both proving it’s validity and others proving it as an invalid method of aiding those who do not speak to communicate. This post is not about whether FC is valid. Those who do not believe in FC’s ability to help those who cannot speak will not be swayed by anything I write here. For those who are interested in reading more about FC and its history you can do so by reading this and this and the many links embedded in these posts.

What I will write about however, is all those FC users who have gone on to type independently. And here is where things get really interesting. Those same people who are convinced FC is all a mirage, a kind of non-speaking, Autistic version of an elaborate magic show, remain convinced the non-speaking person who now types independently is not really doing so. Those people continue to insist it is a “hoax” despite witnessing, some even after seeing in real life, a non-speaking person type on their own.

Just to be clear, I am not writing about hand over hand or a hand on a forearm assistance. I am writing about the many people who began typing with a facilitator, but who now type independently. By independently I am referring to those who may still need a trusted person standing nearby. Some type with another person’s hand placed on the middle of their back, others may need a hand gently placed on their shoulder. Yet these same people who speak out forcefully, often aggressively to any who dare write about someone who is non-speaking and writing of their experiences, say even a hand on the back proves these non-speakers cannot and do not type their own words. They insist that they are merely puppets doing the bidding of the person who is physically nearby.

What fascinates me about this is that these same people who insist it’s all a “hoax” (this is the word they usually use) would rather believe a person can move a seated, non-speaking person’s hand to hit specific keys on a keyboard by virtue of their physical presence, rather than entertain the notion that this non-speaking person, may in fact, be typing their own words. One such person commenting on a blog post about something unrelated to FC, but that had a link to Barb Rentenbach’s book, I Might Be You, wrote, ” I don’t consider typing with an arm on the shoulder independent typing. You can clearly see the facilitator nudging her towards the letters.” Not to quibble, but seriously? So this is like some sort of typed ventriloquism? Touch someone’s back and direct them to write thoughts that are not their own?

I urge any of you who believe this is possible to try doing it… place your hand on another’s shoulder or the middle of their back and see if you are able to control what that person then types. And while you’re at it, try standing next to the person and psychically urge them to write something. It seems incredible, but there are those who not only believe this to be the case, but they then demand “proof” that this person is typing independently, despite the fact that they’ve just been given the very “proof” they asked for. Evidently “proof” is subjective.

What bothers me about all of this is that those who are typing to communicate are doing so because they have no other means. This is not a “choice” that’s being made. The people who continue to insist they are a “hoax”, that it’s all a “mirage”, that they are being “controlled” are taking away the only way they can communicate. They are silencing them. They counter this assertion by saying that on the contrary, they are actually “advocating” for those who do not speak and are protecting those who are at the mercy of a facilitator who is putting words into another’s mouth. Yet, even when confronted with a non-speaking person’s typed words, typed without anyone’s hand on their arm, they continue to insist the very presence of this other person is all it takes. The transference of perceived power to cover up their dehumanization of another is convoluted.

If you google “Carly Fleischmann” the third entry that comes up is “Carly Fleischmann fake”. Sadly Carly is not alone when it comes to such beliefs. There is a long and horrible history of non-speaking people being discounted and effectively silenced by those who believe they cannot possibly be intelligent, insightful beings. There are those who will dismiss people like Carly as an anomaly, a “prodigy” and thereby ignore the years of effort it has taken her to get to where she now is, or they conclude she is a “fake”. There is nothing new about the silencing of human beings deemed inferior. (Read Inventing the Feeble Mind by James W. Trent, Jr.) The ingrained prejudices and dehumanization of Autistic people continues.

I want to end with one last thought, which is this – if you found yourself unable to speak, but could type to communicate, yet when you did so, people doubted the validity of your words, accused you of not actually writing what you’d so painstakingly typed, what would you do? How would you respond? How would you fight back? Could you fight back? Restraints come in many forms, but all are effective.

As Barb Rentenbach writes, “I might be you.” For those who doubt that sentence is her own, you better hope those words are wrong.

Barb types with Lois’s hand on her back as Emma twirls her string – April 2013

73 responses to “Non-Speaking People Who Type”

Preach it, Ariane! Thank you so much for writing this blog and for speaking up for those who cannot speak for themselves. (See Proverbs 31:8a). This happens at times to Kimberly because she still needs support most of the time. There are times when she does type independently with me just sitting beside her, but it is hard work. I am wondering if there are many non-verbal individuals who don’t strive to become independent because they feel like no one will believe them anyway.

Brilliant. Insightful and balanced. My own daughter, who has Down syndrome and other complications, continues to astound me in her 30’s with the clarity of her understanding despite the impossibility of communication. Many people with Down syndrome communicate well. Many, like my daughter, do not – but they still understand so much, and so deeply.

I think the touching is very important, love matters. We spent many years working with speech and language therapists (do you have them in the US?) who were great. It is a hard profession, lots of study and little reward. Mainly taken up by women. Our best focused on mimicry and that still seems to me the best way, the most natural way if you like. But is a slow process and after some six-months she left to have a child, which is the best thing in life.
We need somehow to adjust matters.
Thank you for writing this.

Oh my dear sweet friend there are people who don’t believe the Holocaust happened and that the earth is 10,000 years old. I won’t go any farther compiling the ridiculous list of stupid things people believe and don’t believe. FC works for Emma, it is opening up a whole new, wonderful brilliant world for your family, you are meeting tremendous people who make you happier than you may have ever been. You are filled with hope and joy and fascination, keep going. Keep doing what you are doing. You can’t rid the larger world of stupidity, but you can fill your world with awe and wonderfulness, and that is what you are doing.

Thank you for addressing this so clearly.
Anecdotal aside: I spend a great deal of my time in a twilight between speaking and not speaking. In those times, I have only found one thing that will help me focus to pull up a few needed words; a very trusted person placing gentle pressure on my back between my shoulder blades. Fast forward to the first time I saw videos of FC and saw this same contact often deployed. I cannot explain what mechanism takes place there, and know that my personal experience is not a double blind, peer reviewed independent study, but it made perfect sense to me.

I’m so glad you wrote this Bridget. It reminded me of a time when I was very sad and had no words for my sadness, a dear friend gently placed their hand on my back and just left it there. I remember clearly, now years later, thinking that hand held there on my back said more than any words could ever say. Sometimes we just need another’s touch to feel encouraged and supported.

And Life & Ink is so correct – these doubters are the people who have lifetime membership to what my dad (a priest) refers to as The Flat Earth Society.
I’m beginning to think, especially based on the ongoing internet wars, waged by anonymous masses, that we ought to build our own communities with those who matter to us – listen to dissent to know what’s being said – but soldier on when we believe. Without hate, without anger…I’m not going to respond anymore to things that create upset and negative emotion (that Autism Society thing was more than enough).
Our first and last concern should be creating positivity and setting a great example whenever we can – for our kids and as a legacy to society.

That said, we’ve decided to hold M back a year (I wish you could meet him – Mr. Song & Dance) – to give him time to get closer to academic level without middle school pressure, I officially asked for an ipad for school/home use, and they are going to implement keyboarding at school, I guess to be supported however we can at home.

And, we’re taking off in 8 days for a travel-extravaganza. As long as there is a swimming pool at the end of every day, I think we’ll be fine – I was thinking of Emma when Mackie was invited to swim in the neighbors’ pool, at a brisk 56 degrees, but he did NOT care. He was in heaven….

Thank you for this fabulous column. As an occupational therapist I work with so many kids and teens who benefit from varying levels of assistance, from verbal prompts to hand-over-hand help. Sometimes all it takes is a hand on the back. In my workshops, I liken it to what happens with old-fashioned, pre-cable rabbit ear TV antennae. They didn’t work all that well to eliminate the static, but the moment you touched them, the TV’s sound and image reception became strong and clear. Sound familiar?

It is just cruel to question someone’s “voice,” and ignore their struggle to communicate; to dismiss Barb and the ten years it took her to write her book is truly mean-spirited attempt at silencing.

There is something about touch that can be essential for confidence, focus, or just feeling like there is a safety. My kiddo is 5; she is learning to write and type with my holding her hand. She is learning to point with purpose, sometimes with my touch on her elbow or shoulder. She asks for it by raising her elbow toward me and looking at me. She knows she can do it, point to her choice, her answer, the word on the board, but she sometimes wants that extra touch of support. When I see people like Barb and Carly and your Emma, I have hope because I can see it in my child. I see it when I let go and she does it on her own and surprises herself. I see her doing that more often.

We can’t control what others think. But thank you for speaking out. It is important to not allow the silencing.

Part of communicating, is knowing that those with whom you are communicating have confidence in what you are saying. That confidence encourages you to keep going–to keep talking, writing, singing, etc. Those who communicate with FC,despite their naysayers, are my personal heroes and heroines. They are my Martin Luther King and my Helen Keller. Barb Rentenbach is at the top of the list. Thank you for your advocacy for all of our voices.

Ariane, Great term for a new communication intervention: “typed ventriloquism”! Along the same lines, what you are talking about is what I have often thought about as the “empty vessel” theory: that people who type to communicate and need some level of physical support or proximity support to do so have no thoughts of their own and are simply “empty vessels” for their facilitators to “pour” their thoughts into. Where is the proof for that theory and to follow it to its logical conclusion, does this mean that all people across the country who use FC are not capable of complex thinking and that all facilitators are manipulating their communication?

And along with this idea they are incredibly patient and sit endlessly at conferences, allowing another person to touch them continuously, allow their hands to be directed to create words that are not their own, meanwhile these same people are considered “behavior challenged” and lacking “focus”.

BTW – Em said the other day, “Go see Pascal soon!” She is hoping she will see you in Syracuse in July. I told her I didn’t know if you’d be there. Will you be?

You know, when I am being an “empty vessel,” that is, when I am not capable of SPEECH, I can write just fine, thank you, including doing my job, which requires thinking and typing, and could not conceivably be produced by an “empty vessel.” (Sometimes people try to develop software programs that can do what I do, and to date, none of them have succeeded, but that’s another topic!) I hope you don’t mind if I post the link to our interview, Ariane. I don’t know that everyone here has seen that. You can remove it if you want. http://www.huffingtonpost.com/ariane-zurcher/life-with-autism_b_1996962.html

Your posts keep getting better! This one expresses so well the extreme frustration I have felt for about 20 years now when it comes to the skeptics raining on our parade. I agree with Pascal that “typed ventriloquism” is an apt description. Love his “empty vessel” theory too. If we had all been working for 20 years to figure out how and why physical and emotional support can help a person organize and express their thoughts instead of debating the hoax/reality issue, we’d be so much better off! Keep writing!!!!

That could not have been pleasant to write. I was frustrated reading it. So much of it boils down to the myths that still circulate: People with disabilities, in this instance non-speaking autistics, are less. I am autistic, Ariane, therefore I am less capable. My daughter is autistic therefore she is less capable. And if a person is non-speaking and autistic, like my son, he is perceived as not only incapable, but incompetent. Rubbish! But… I see it when people look at him: Pity – and the belief that he is not a competent, capable human being. It’s ignorance.
Another excellent piece by the way.
Love to you guys 😉

My communication abilities and efforts are what they are whether you believe it or not.

At one time people did not believe the world was round. They believed it was flat. The erroneous belief did not change the facts.

Your erroneous beliefs about me will not change who I am.

Unfortunately, the beliefs of the majority, erroneous or not, determines the opportunities of the minority.

The majority holds the power in bestowing upon the minority. The assumed power of majority makes you righteous, whole and right while making me less than, broken and wrong. Being part of the majority gives you power over the minority. How do you use your power?

Just because majority power has been used to silence autistics since the beginning of time doesn't mean you need to continue on this course. People changed their belief about the world being flat when they saw it was not true. I have hope that people will someday change their belief about how some autistics communicate when they see their beliefs are not the truth.

In the meantime, please know we are human beings, we communicate, we have feelings, we have lives, and just like you we need to love and to be loved ~ whether you believe it or not.

well friends im pecking out a just response, a chapter really. i adore your passion and will do my best to help educate and machete a path for my younger siblings. i beg your patience as my style of hoax typing is f-ing slow. love patient and forgiving b

💕Patient and forgiving Barb – I will do my best to follow in your patient and forgiving footsteps as I am currently struggling with both. Love impatient, irritable, but trying hard to be mindful A

I swear I could have said exactly the same. It’s so hard to remain calm and balanced through this (and I keep thinking that if it is for me, my God I can only imagine what it is for our friends), but I’m trying. My next post, admittedly not as eloquent as this one, but no less heartfelt, is waiting to serve as an introduction to barb’s words.

Thank you, A. For your support yesterday amid the nightmare, for this beautiful post, and for the example that you set every day.

I don’t understand why we don’t get this same “hoax” argument against AAC users. Communication devices with preloaded symbols/words that someone else has programmed (i.e. input the words), is the ultimate “facilitated communication” IMO. And yet you see people composing messages from those and no one refers to it negatively as “facilitated communication” as if it’s a bad word (thanks to the National Standards Project for creating the negativity about FC btw). Honestly, if someone is typing a message on a keyboard, they have greater access to their own words than those relying on a communication device. The goal here is “generative language” and shouldn’t matter what mode of communication is used to achieve that IMO. We need to listen to the “voices” regardless of the form they take.

Probably because of the specificity involved in typing, where people have expressed some pretty deep and insightful things that pointing to a photo wouldn’t be able to convey. I think those who believe, despite witnessing first hand those who are clearly extremely intelligent, that it isn’t possible, are unable to move beyond their own prejudices and limited belief systems.
Soma Mukhopadhyay, who does not physically touch the person she is working with, but does incredible work with a wide array of profoundly challenged people, is doubted by those same people as well. Despite the fact that Soma has worked with thousands of people, people who are deemed incapable and incompetent. Yet she is still disbelieved and has been accused of manipulating the person she is working with!

If someone puts a hand on my shoulder and tries to get me to type what THEY want? Um…. muscles don’t actually move that way. So much for “scientific evidence” that assisted typing doesn’t “work.” Also, if the person put their hand on my shoulder when I was not expecting it, I might type something they’d rather not read! 😉 As a person who can speak, with difficulty, most of the time, but who also has many times when I can NOT speak AT ALL, but can type, it always is mind-boggling that people would think that speaking and writing are even really related. They both involve language, it’s true, but they are completely different “skills,” with different muscles involved, probably different parts of the brain (someone can research that while they are researching how touching someone’s shoulder could make them type “I want a cheeseburger!”). Ariane, thank you for walking the front lines on this topic.

Great post. Learned a lot, thank you. I can remember about a month ago receiving a call from my younger sister Sydney and her going on and on about this boy named Alec who wrote his very first talk for their church congregation. Alec is 16 and because of facilitated communication, he was able to write his very own talk. What made this experience even sweeter was when he stood in front of the 200 person congregation w his 18 year old brother. His brother, a true friend and hero, read Alec’s words to each and every ear listening. Alec stood close by eating a bag of chips and drinking his Peligrino water:) I wish I could have been there in person to witness this memorable and heartfelt moment. His parents later told Sydney how hard he had worked for that moment in his life. How no one in the audience could even begin to understand the implications of a non speaking autistic boy giving a talk to a couple hundred person audience.

To use the words pretty amazing seems insufficient to describe such a moment. I dont know Alec personally, but I am proud of Alec. Proud of the courage it took to stand in front of the audience. Proud of the thought and effort going into his talk. Proud of the example he has set for so many. Proud of the awareness he spreading. And proud of all his hard work each and every day.

My autistic daughter is verbal. No facilitated comunication necessary to aid her in expressing her thoughts and ideas. If she WAS non verbal I would like to believe she would be just like Alec…working hard each day and finding that FC is the avenue to help give him a voice. Isn’t that what this life is all about for every person young and old? Find the routes that help us grow, learn, experience, and become. There is no single route. There is no “single magic bullet”. FC is just another route. Who chooses to take this route does not matter. What matters is that we choose the routes that work for our own personal road trip. All naysayers are nearly bumbs in the road.

Sometimes when I am writing about things that are upsetting to me, Layenie is sitting next to me on the sofa, even putting pressure on me with her whole body, the way you might think, if I were not a disabled person (well, or gay, but that’s another story) a supportive wife would do. She helps me calm down, keeps me from pacing and jumping around muttering frenetic panicky angry things or trying to fly away from the situation, helps me get my thoughts together, so I can use my real true voice. Some people say my voice is idiolectic and strange; others say it is articulate, engaging and even powerful. But it is mine, even though sometimes Layenie leans into me for support when I am typing. With. Her. Whole. Body. And there are people who will believe this is true of my disabled Autistic self only–ONLY–because they have seen and heard (or at least heard tell of) me orating with my mouth like a “real person”. My prayer is that society will look back on this time of injustice and bigotry the way they look back on other times of massive cultural shame and evil, telling their children, “Can you believe we were once like *this*?!?”

“My prayer is that society will look back on this time of injustice and bigotry the way they look back on other times of massive cultural shame and evil, telling their children, “Can you believe we were once like *this*?!?” Me too, Ib… me too…

I spent part of today with people who are lifelong activists in other important areas. I was thinking along the same lines as Ib here: “My prayer is that society will look back on this time of injustice and bigotry the way they look back on other times of massive cultural shame and evil, telling their children, “Can you believe we were once like *this*?!?” A resounding YES to this idea. Some day it will come.

I have just watched the moving, brave video. What clarity – and what courage. I could have cried when the paper came up saying “It’s probably because I didn’t try hard enough.”
Words are by no means our main communication, for any of us – expressions of love, courage, hope, engagement with reality and art, song, dance – these matter far more. Your daughter writes powerfully Arianne. How might she sculpt? Make pottery? ‘I saw an angel in the stone’ said Michaelangelo, ‘and carved to set her free’.
Most of us are overwhelmed with words – books, press, radio, TV. We all need more art. And we all fail. Inspiring courage for she kept on going.
Thank you for sharing this.
Kind regards
Angus

Thank you so much for this Angus (I love your name, by the way.)
” ‘I saw an angel in the stone’ said Michaelangelo, ‘and carved to set her free’.” Wow. That really spoke to me. Thank you so much. I’d never heard that quote before.
Paula’s video was wonderful! I’m glad you liked it

Another strange double standard….that someone being able to type their own thoughts with the reassurance or prompting of touch from another person is some unbelievable magic….

But the notion that a prompter or facilitator could be channeling THEIR own thoughts through the typing of an autistic person by only a hand on their back or shoulder? That’s not unbelievable?

I would like these purported abilities of psychic control and transmission by non-autistic people tested under controlled circumstances.

(I think a high degree of skepticism is called for in facilitation in which the person doing the typing doesn’t have control of their own hands. Because it would indeed be horrible if what was being passed off as their own communication was not theirs. That WOULD be robbing a person of their own authentic voice. But if someone clearly has control of their own hands, then I am really, really curious as to how this transmission of complex thoughts by a hand on shoulder muscles thing is supposed to work, and why I’m not supposed to be equally skeptical of that.)

Well, well, well. Could we just say the magic word. MONEY. Why are people so invested in not believing that my daughter, your daughter, Amy Sequenzia, and all the other incredible people who have discovered a way to break through the concrete of their body/mind to communicate….money. Because they would lose their jobs, investments, way of life.
Because the hoax is them.
I so appreciate your post today Ariane, but I will not show to Emma. Yesterday we were at the College and she was having difficulty understanding what the therapist wanted her to do. I watched my brilliant daughter, for the first time, take that woman’s hand, and have her assist her in typing out what question she needed to ask. So, for all those people that say “they only type with one person” or “somehow its psychic” or whatever kind of garbage….frankly to hell with them. I have never been so proud of my daughter because yesterday to me was what I call the road to independence. She didn’t know that therapist, but she sure wanted to know what the goal of the exercise was……and she asked!!!!!!!!

You make perfect sense to me! I actually tried facilitating my NT daughter when she was a kindergartner and it did not work because she had not yet learned to read and spell! This validated the strategy for us because my older son with autism, who was a 3rd grader at the time, was able to type! And may I just say that he successfully completed his Freshman year of high school, fully included in all General Ed classes! Lets talk now about how one’s QUALITY of life improves when their communication is supported!

Something I have learned from my students over the years is that they require a safe, nurturing environment which includes people that believe in them and their abilities to begin to express themselves. Once trust is established, then the door can open to teach them things which you can then begin to discuss. This then opens another door and you can learn what their opinions are on various topics and learn about them as people.
Every single person affected by autism that I’ve ever met is a star that shine brilliantly. They all have interests, feelings and opinions. They are intelligent and once given a mode of response that works for them, can learn to share with the world what has been trapped inside.
How inspiring your words are and those of Judy Endow. This is why we opened an autism specific college. We believe every student deserves to be heard and live a productive life that has meaning. Thank you for affirming this yet again.

My 13 yr old nonverbal son started communicating when a speech therapist in our school district started using RPM with him and other non verbal kids in the district. It didn’t take long for him to take off with it. He is up to typing now, and an iapd and keyboard. It very slow going and very, very draining for him. If anyone outwardly doubted his words after all the HARD work he’s put in probably be in jail. To finally be able to hear his opinions and thought about things is just such an amazing gift.

Thanks for an informative post. I have to admit that I didn’t know much about FC before reading this. The judgement of other people saddens me as I feel we should be celebrating success and giving encouragement. My 14 year old son is pre-verbal and it has taken him many years to learn his alphabet and to type a few words. I would be devastated if people didn’t believe in his ability.

FC has had a number of problematic cases that have been used to suggest any and all who use it are similarly suspect, but like any abuses of power to then say the entire practice is rendered irrelavant because of a few, is short sighted and incredibly harmful to everyone else.
Wonderful news about your son. We have to celebrate and encourage, the alternative is too damaging.

Just wanted to write abit since I noticed this blog when googling the legitimacy of the Carly Fleischmann story after watching a random youtube clip (abc program). The google search is perhaps not the negative thing you seem to interpret them as (or maybe you just used it as a segue and I’m reading too much into it?). Your argument is that some people just will not accept these stories (for whatever reason). Such people exist. But these people have their mind set already, they would not inquire any further. It is more likely the sceptics, ie those who would like to know for real and who likely want it to be true, that have made those searches! Not everyone has personal experiences with this. Most have seen it only on tv. “Not everything on tv is true”! I believe most made that search because they wanted multiple and/or more credible source(s). To prove it true, not to prove it false! Personally I felt the abc program was directed and cut like a reality show rather than the scientific or newsy type programs I’m used to. It simply did not lend enough legitimacy to the story since it was so similar to other shows with dubious content. Thankfully I could look elsewhere – I googled and I used those exact three words. Those words have now proven the story for me (to a sufficient degree; always the sceptic) and many other!

The youtube video to prove that Carly Fleischmann was speaking on her own is what actually convinced me that she was not. It is clear that she is not talking on her own. If FC is real why can’t you prove it. It would be easy to prove. I know that everyone wants their child to have a voice but to use these individuals a puppets is inhumane. I am sorry, I have looked at the evidence. FC IS A HOAX.

Except that Carly Fleischmann does not use FC… and neither does my daughter… but even if they did, there are many who have used FC and have moved on to type independently without anyone touching them at all. There are countless people (you can look at the Resources page on this blog for all the people who do not speak and yet communicate through writing) who are expressing themselves through a variety of AAC devices.